In 2010, the German Federal Ministry of Health (BMG) together with the German Federal Ministry of Education and Research (BMBF) and the Alliance for Chronic Rare Diseases (ACHSE e.V.) founded the National Action League for People with Rare Diseases (NAMSE).
NAMSE is bringing together all key bodies and organisations of the German health care system to enable concerted action. All partners of NAMSE (28 in total) adopted a joint declaration stating the common goal to improve health and quality of life of people with rare diseases in Germany.
Goals of NAMSE:
National Plan of Action for People with Rare Diseases
In August 2013 Germany has published the National Plan of Action for People with Rare Diseases. After a three-year coordination process, which required the commitment of all those involved in the German healthcare sector, a total of 52 policy proposals were compiled. They represent a concerted effort of all 28 NAMSE partners, all responsible for the implementation, and reflect a wide spectrum of tasks on information management, possible paths to diagnosis, care-giving structures and on research into rare diseases.
This catalogue of recommended policy suggestions and proposed actions completes the initial phase of the NAMSE process. The next step is to implement the actions and accompany their further development.